Rising above worry, how does God fit in this situation

Practically every day at the moment is filled with questions, what does he need, am I understanding enough, is he going to talk today, how can I encourage him to talk, is he going to feel comfortable with family or friends at the shopping centre at a restuarant, at school. Without carefull attention I can be consumed with worry. I read something recently that gave me a little focus so I thought I would share it with you.

"We all worry from time to time, but wise people have learned to avoid over anxiety by following these guidelines:

1. Define the situation clearly. What exactly is it your'e worrying about? Be specific. Often when we take the time to clarify a problem, a way to solve it will present itself.
2. Face the worst that can happen. Would you lose your job? Your relationship? Your investment? In most cases even if the worst did happen, chances are it wouldn't ruin you. It may be inconvienent or painful, but does it really warrant all the anxiety you are giving it?
3. Resolves to accept the outcome, whatever it is. Most of the stress of worry comes from denial, from not being willing to accept whatever happens, you'll find worry loses its power over you.
4. Work to improve the situation. Renowned neurologist James H Austin said 'Chance favours those in motion'. Do all you can to ensure the best possible outcome, and after you have done everything... stand (Ephesians 6:13) Stand on God's promise
5. Give the problem to God. He's the controller of all thing. The Psalmist said, 'Those who know Your name will trust in You, for You Lord, have never forsaken those who seek you. (Psalm 9:10) Remember nothing can happen to you today, or any other day, that God is not aware of, in control of, and able to bring you through. "

Taken from a devotional called Word for today, October 13,2010

Of all the things I am anxious about, instead of worrying about the what if, I need to ask myself would it really be that bad, what could really happen. What am I living in denial about? What should I accept the reality of, the outcome that I am not accepting. Secondly what is helpfull for me to think, is to do what I am able to do and then leave the impossible up to someone who is capable of dealing with the impossible, God. Whether or not you believe in God 1-4 are still applicable for all those dealing with worry.

Just when you think you are making progress

So after thinking everything was ok after Josiah going missing when we were in Perth, after we had settled back in at home, he suddenly stopped talking to me this was an issue obviously and at first I felt quite rejected and frustrated. I remember one time after Scott come home going into my room and bursting into tears to hear his voice after not hearing him speak for the most part of the day.

What also complicated this further is because we have our father in law staying the once safe place has been compromised which I would imagine would not make it in the slightest bit easier on Josiah. Something for now we can do nothing about until the holiday over, now only in a week's time, which will show us how he really is going.

At first this only effected myself but gradually it extended to others including my partner and his Grandma until there was only one person with whom he would speak, now after we got used to this situation, then he stopped talking to Grandad as well. Since then it has been two weeks since he has talked normally and it is hard living with a silent child.

We tried to get some help but unfortunately our normal psychologist is away for the holidays and the CAMHS are unable to help us into the New Year. So consequently we have been coping with this situation on our own. Mostly we cope ok with moments of fear interlacing with frustration and sometimes anger.

Before all this started we participated in a program called Babyhands where Josiah learnt basic sign language in the hope that he would use it at school when he was unable to speak. This has come into use now and he is able to at least begin to communicate in this way. And he has also started using this with other people who he hasn't spoken to in the past which is great because this in itself is a step forward.

So we are in the waiting game now to get any appointment for help in dealing with this so we don't enable his behaviour. Just hoping something happens soon, or that Josiah will re-emerge as a loud and noisy child he normally is.

What to do when your child gets lost

One thing that I have always feared is what do I do if Josiah ever got lost. Most children can ask for help, can say their name, their phone number who their Mum or Dad is. But a child with Selective Mutism is limited to respond in any way.

Before he went missing, we knew that he was already struggling. Our son who normally could talk to us had reacted to the pressure of Perth the crowds shopping and the loud noise, and was now not able to talk to us normally, he could barely answer questions. Even when he did he nodded by lowering his head in a way that he only did at school. So we had announced that we were going home and he knew we were on our way to the car park.

One second he was with us and we stopped to look at something, when he kept walking. It only took a minute for us to realize that he was gone. We waited literally two minutes to look around and see if he was anywhere. I then called Westfield Security who were good. I gave them information about what he was wearing his name, and also the fact that he could not speak and would most likely react badly to them helping him.

After this I was about to walk to the concierge desk, when I head my son he was screaming and I could tell he was coming towards me. I waited anxiously and finally I caught a glimpse of him and I knelt down and waited for him to get to me. The security guy bless him he was dark skinned and had Afro hair which would have been unfamiliar for Josiah and I knew he was a little scared of them normally. The staff at Westfield said that a lady had brought him to the concierge desk. They tried to get him to come with them. But he ran away from them in fear. They told me that they tried to tell him that they were trying to help him find his Mum. No help.

So now what can I do for the next time this (which I hope) never does can I do. Firstly I know that he knew who Police were and had recently had a discussion with him that they are safe and to go to them if he feels scared or loses us. To stand next to them and wait for them to help him. But I had never told him about security people so next time I will make a point of showing him who they are when we are at shopping centres. Also next on the list is possible finding a bracelet he can wear to show his name that he has Selective Mutism and my phone number. I will post later if I find appropriate ones that can be ordered from Australia.

Some more progress

Appointments

So recently we got a call from Child and Adolescent Mental Health Services to go in for an appointment for assessment. We went in chatted to someone, talked about how he is going, what is the problem and so on. He even asked if we can deal with this on our own I am not sure what he was meaning behind that. I responded that we are working blind at this stage just trying whatever works and we need some help. I think I have been so stressed and it come to the meeting and I had got all my stress out the week before. So it was hard to describe to him how hard it has been for us. So apparently they can work at the school. However we need to wait till the New Year for an appointment, I stressed how much we need it to start before the school year.

We also had a speech therapy appointment on the same day. After finding it so hard in these sessions. This recent appointment was amazing. Instead of doing the assessment with her in the room she sat outside listened and got it all recorded on a dictaphone. Which meant Josiah could feel comfortable and then she come in slowly further away and come in closer and closer till she sat down with us. This worked really well.

School work

This Monday just gone we did have some progress. Armed with some new activities from the speech therapist. We worked on story sequencing which was great. Then we did a barrier game, I sat with Josiah and the teacher sat on her side not looking at Josiah. He was able to give instructions with some help with the words and he whispered them to her which was great progress. Think it is the first time he has been able to do this really at all. I felt great that he felt comfortable to do this.

A barrier game you have a picture and each person can not see each other's picture and each person gives instructions to put object that are pictures in different areas of the paper. This helps language skills. Such as next to on, beside and so on. And definatley worked in this situation for Josiah. We will be doing this activity again soon I hope because it worked great!

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Latest development

Paeditrician Report

So just yesterday we got our report back from the Paedatrician. Great thing is very subtly it reads that he would like the speech therapists to do a I quote "more accurate" speech assessment. Also recommending that because we struggle financially to see the pyschologist we need help from Child and Adolescent Mental Health Services from the hospital.

Overall I am pretty happy with what he wrote. He said he has a normal IQ which is reassuring. So we got a phonecall from the Speech Therapist. We also got a phonecall from CAMHS and they are going to discuss Josiah at their next case meeting. Hoping that someone will come out of that. Planning to contact them on Monday to find out.

Recent progress

So it would seem Josiah is making more progress. Little by little. After speaking in front of my sister for the first time. On the weekend he spoke clearly at the dinner table at the park. So asking for sauce more food and other comments. Obviously not talking to my rellies but talking in front of them is something he has NEVER done so that is great for him.

At school we have been working on playing with kids one on one. And we have done that for two weeks. We are realising that working with the teacher in the last term won't help him a lot because he will be going to a new classroom with a new teacher next Summer. So he played with around 4 kids and all of them he talked in front of them, which is great.

One kid actually exclaimed in shock "Josiah talked, he can talk" Josiah continued on with his activity like it was no big deal. But I guess he thought it was pretty amazing. Also we did some easy book activities with three kids including Josiah and he was able to answer what number it was eg counting. Mostly he didn't need me to ask him again, he whispered but it all is progress.

Selective Mutism-Stages of Social Communication Scale

Non-Communicative

Stage 0 - NO responding, NO initiating

Child stands motionless(stiff body language), expressionless, averts eye gaze, appears frozen 'MUTE'

OR

Seemingly ignores person while interacting or speaking to other(s) MUTE toward others

For communication to occur, Social Engagement must occur

COMMUNICATIVE

(Nonverbal and/or Verbal)

To advance from one stage of communication to the next, increasing social comfort needs to occur.

STAGE 1 - Non verbal communication NV

1A Responding - pointing, nodding, writing, sign language, gesturing, use of objects (eg whistles, bellws, non voice-augmentative device (e.g. communication boards/cards, symbols, photos)

1B Initiating - getting someone's attention via pointing, gesturing, writing, use of objects to get attention (e.g. whistles, bells, non-voice augmentative device (e.g. communication boards/cards, symbold, photos)

STAGE 2 - Transition into Verbal Communication TV

2A Responding - via any sounds )e.g. grunts, animal sounds, letter sounds, moans etc.) Verbal intermediary or Whisper Buddy; Augmentative Device with sound (e.g. simple message switch, multiple voice message device, tape recorder, video etc)

2B Initiating - Getting someone's attention via any sounds (e.g. grunts, animal sounds, letter sounds, moans, etc.): Verbal INtermediary or Whisper Buddy; Augmentative Device with sound. (e.g. simple message switch, multiple message device, tape recorder, video etc)

STAGE 3 - Verbal Communication

3A Responding - Approximate speech/direct speech (e.g. altered or made up baby language, reading/rehearsing script, soft whispering, speaking)

3B Initiating - Approximate speech/direct speech (e.g. altered or made up baby language, reading/rehearsing script, soft whispering, speaking)

Resilience without communication?

Something recently illustrated one of my greatest fears, is that when my son is in trouble he is not able to speak out and get help. So last week or the week before there was an incident where he was shaken by the collar, enough for him to be in fear. Another child called for help for Josiah and it was dealt with fast.

We had a discussion, firstly on the issue of sharing. Just because someone wants something does not mean that you have to give it to that person. You are allowed to play with a toy but it is important to share with others especially if you have had a turn on the toy. That he can go to others for help or simply going closer to the teacher will help him be safer.

Resilience is a quality we want our children to possess. Part of this is the ability to communicate in some form or another. Asking for help is a quality needed to survive in our world, and it does bother me that Josiah is not able to do this at this stage. But we are hoping that in the future he will feel more comfortable.

When you don't think anything is happening.....

When you are a parent in the middle of trying to help your son deal with problems he is dealing with it is hard to see the progress unless you take a step back. But as I have discovered recently there is progress small significant steps that if you don't take the time to observe you miss it.

So in the interest of observation these are the things we have noticed recently that has been great.

• First of all Josiah spoke in front of my sister Lucy. So far my son is four and she has not really heard him speak full sentences. On this occasion he spoke a full sentence and a good one at that in front of Lucy.
• He has also spoke in front of other people that aren't in his comfortable circle. Usually when myself or Scott is present but it still is progress.
• A significant step at school is that Josiah has felt comfortable enough to respond to the teachers with a simple nod when asked a simple question such as if he wants fruit or wants to ride on a bike.
• Josiah is now able to call out for me in the shops, and has been able to hand over money or items when buying something for himself.
• He now shows facial expressions when spoken to smiling, frowing and so on. In the past when spoken to he would look back with a blank facial expression showing no emotion.
• In the after school sessions Josiah is also feeling more and more comfortable and is not needing to have as much support to speak in front of the teacher. This afternoon I noticed that instead of having to ask the question again, which he will answer me, he answered the teacher's question straight away.

Perspective is a powerfull thing. I wish I had more observation skills to take in the progress that is being made so I don't feel as discouraged at times, and to notice how much things are getting better and improving.

Such a slow and length process

Thinking about the last few months and the year I can see Josiah has made progress. At the beginning of the year he was so gripped by fear he couldn't carry out activities at school. Now with the help of the teachers, he is able to do most activities. But still is not able to speak at school. It is now October.

To be fair there is progress when before he couldn't speak at all in front of the teachers, he now can. Now he can speak in front of them, not totally comfortably but pretty well. He can answer questions by pointing so he is definitely progressing in the non verbal communication department. This I think helps when the school needs to find out if he understands something. If the teacher asks him a question he can sometimes answer the question to me. Which seems to work most of the time. And he is able to talk to other students when I am around as well. I have yet to find out if he talks to them on his own outside of the classroom.

Speech therapy now that is a different issue completely. His last appointment was months ago, and we haven't had any contact since. From my reading the speech therapist's have a lot to do with the progress of the children and are able to have a important role in their recovery. But up until now it has been quite pressure filled and I even feel the pressure for him to speak from the speech therapist. Which is difficult as we are trying to eliminate that pressure. Without the pressure it is different. For example in front of the occupational therapist, he has been able to talk quite quickly in front of her and not feel too pressured, it makes a huge difference. So we face the dilemma we can not get private speech therapy on our medical insurance but I think we are hitting a brick wall with the current therapist.

On the other hand the psychologist has been fantastic we are due to have another meeting with her this week. Which is the next step, next term it is really important we help Josiah prepare for the changes in next year for him. A larger class and different teachers. So the plan is to transition him in. First of all I need to work out what we want Josiah to be able to do in regards to speaking goals, non verbally and so on. Hopefully I can figure this out in my mind soon most importantly for the next appointment.

The long awaited appointment with the Paeditrician

We had waited for an appointment with the paediatrician to make sure all is well with Josiah. The waitlist was 3-4 months which was quite a while. This was definitely a disappointing experience. I am not sure what I expected but I had hoped there was a key that we could access for further help or some actual experience with what we were dealing with.

The paediatrician himself was fantastic very nice and gave Josiah the opportunity to warm up before he started talking to him. He was able to test him for his IQ and as we had expected he is average. The concern is that he may have some issues with learning that he is coping with very well that we have not been able to see as yet. Most likely not the case but it needs to be checked regardless.

So he agreed with the diagnosis of the psychologist. That is the gist of the whole meeting. We were told that we would most likely be the experts with selective mutism as it is so rare. This was quite disappointing for me and I think I burst into tears at one point. Mainly because we have been working so hard to help him and the journey has only just begun. It is incredibly hard to imagine we have so far to go before he gets to the point where he doesn't experience fear in regards to speaking anymore.

My Child Won't Talk

Recently in Australia on ABC they had a documentary. It was really good for me, seeing the struggles that the families had with SM and how they responded. It also included great examples of the therapy that was used and how they implemented it to get the children to talk in different environments.

It was really challenging to thinking about the long term because it isn't something that is over with over night. The therapist they referred to wrote the book I have read called the Selective Mutism Resource Manual which is a fantastic resource, her name is Maggie Johnson I believe.

Communication Load

One thing, that has always been a struggle with my son. Is that from a young age he always struggled to say ta, please or any manners at all. In our society it is almost rude if a young child does not use manners. While I am all for using our manners one things I have discovered is the difficulty for some of us to use simple words like please, thankyou.

In watching each time this happens, I can see the pressure it puts on the child, to speak, and then when people wait (not for the wrong reasons) it increases a sense of anxiousness and possibly a sense of failure. Personally I have struggled with this whole concept and have come to the conclusion, I expect my son to ask with a good attitude, if he smiles and is polite with his nonverbal behaviour that is ok. But I draw the line when he ask's in a rude manner.

So my conclusion, is that some of the manners we teach can isolate those suffering from selective mutism. If they are not spoken to (simply because they don't speak) and the only interaction is related to a feeling of pressure, it is not hard to imagine how the child might feel? Then we wonder why they don't feel comfortable with others? This then perpetuates the cycle of silence.

What I have read is about communication load, there is low, medium and high levels of communication. Examples are:

Low: rote speech counting, days of the week, letters of the alphabet. Factual speech yes or no.

Medium: factual speech naming simple pictures, answering easy questions, with 'forced alternatives' (Is the grass green or purple). Reading aloud. Personal information sharing, name, age, date of birth, address.

High: Answering easy questions without a picture reference. Telling jokes, sharing opinions, fears, frustrations, wishes. "pg 249-250, Selective Mutism Resource Manual".

Do's and Don'ts For Parents

Do

• Listen and encourage
• Parents should form a united team and work together to help the child
• Parents should privately discuss the SM behaviours and create a plan they can both agree to.
• Educate others: this is not stubbornness or willfull behaviour on behalf of the child, as is commonly believed.
• Reward communicative behaviour (nodding, note writing, waving, etc..)
• Build upon the child's existing strengths (signing, reading, etc..)
• Know who and where the child communicates so you can build plans to expand the child's communications skills.
• Help the child build friendships one at a time
• When ready, introduce the use of audio and video taping

Don't

• Ask did you talk today?
• Criticize your child for not talking
• Pressure by demanding speech or trying to trick him or her into speech
• Forget to give as much attention to other children in the home
• Foster dependance. Instead find ways to help him or her communicate with others nonverbally
• Discuss the child and his or her problems in front of the child or with other children in the family
• Praise in public; this attention makes the child more self conscious
• Try to bribe the child to speak

By Dr. Lynn Lunceford, Clinical Psychologist

Comments: Some of these things are helpfull. But others are a little harder to implement. What I find most challenging is not talking about it too much with your child. This is hard to do when your focus sometimes is on the issue and trying to find a solution and make progress. Secondly, not asking if my child spoke when I pick him up from school. This is very hard not to do, I know I don't do it every day, but it still is challenging to think about it!

First appointment

The first appointment was quite lengthy. Looking at everything from crawling, walking and that. To how he presents when he can't talk what happens and what his body language is. It is hard to think of how it works, when you are used to the behaviour. So I am going to take a little more notice now.

So she said fairly quickly that it sounds like he does has selective mutism. One thing I do notice she sometimes refers to it by its old name elective mutism. Her experience sounds like she has the right kind of experience even if she hasn't dealt with it before. Dealing with quite a few children who don't talk.

So the strategy is going to be social storying, which I am surprised I haven't heard of before. Basically little books describing social situations. What I am hoping if he knows what to say, it will help alleviate the anxiety. It's going to be an interesting journey that is for sure.

What's in a name, we finally found out what it was.

By accident we stumbled upon some information on Selective Mutism. It described a child who is happy to talk at home, but is unable to speak in other situations. This definitely needed some further enquiry. This is the link we first found: Selective Mutism: when there's more it than being shy!

So the journey begun, we got a referral to the paediatrician. We found out there was at least a four month wait for her. Next I started calling everyone I could think of, PMH (speech pathology and psychology), education department, autism network (it sometimes presents together), speech pathologists etc.. I rang 8 of the 10 psychologist and slowly but surely they said no one by one. Then the last one, finally said yes. What a breakthrough. Now the hard work really begins!

School now that was a tough one

It become apparent we had to do something once my son had started school. He really struggled, he was not able to talk at all in the classroom, he sometimes laughed outside. But was really worrying is that he was struggling to do tasks. He would often freeze up and not be able to do a simple task like drawing, or an activity. It was common for him to sit for 15 minutes with the pencil/crayon in his hand and be unable to do anything.

The teachers were supportive. The Nurse didn't quite understand what was happening. I explained that he struggled to talk to anyone, we did all the assessment and he come up normal. The suggestions were made were for speech therapy, which was already happening and a referral to a paediatrician. This was where the process become frustrating.

We just couldn't put our finger on it

For some time now we have always known that my son had struggled to talk. It bothered us a little because he couldn't even talk to some of his relatives Aunts and Uncles. However we couldn't put our finger on it. It seemed like when he was spoken to he would freeze up, go completely motionless in his face and then stay silent.

We did all we knew what to do, he had regular hearing tests as a young child, from 12 months on. When he was two and a half he had an operation putting in grommets and taking out his adenoids and tonsils. We had hoped it would get better because we were suspicious that his talking might have something to do with his hearing.

After a few months he did sound clearer and was finding it easier to talk but his shyness didn't go away. I think he may have got progressively worse. He got referred for an assessment on his speech, but when it come time for the appointment. He couldn't talk, he couldn't even point to the pictures. The speech pathologist would leave the room and he would talk again, and the only way she could assess him was by watching me play with him.

He was now 3.5 years old and it was time to start school. We knew it would be interesting. But we knew it would be good for him too.